Padraic and Paula Naughton, residents of Co. Roscommon, are parents to three handsome, smart, fun-loving boys – Archie, 13, and twins Isaac and George, nine.
Every morning when they wake up, the Naughtons wonder if their children will still be alive.
“Each day when the boys get up we don’t know what state they are going to be in. Are they going to be better or are they going to be worse? Or are they even going to still be alive?” Padraic told the Irish Voice during a recent interview.
Each of the Naughton boys has Duchenne Muscular Dystrophy, an incurable genetic disease that attacks all of the body’s muscles and eventually works its way to the heart. Life expectancy is late teens to early-mid twenties. Not only is there no cure, but life-prolonging treatment options are virtually non-existent.
So it’s no wonder that the Naughtons fear for the lives of their precious boys each and every day. Not only that, caring for Archie, Isaac and George has proven hugely difficult due to a number of constraints, chief among them their home in Roscommon which isn’t handicapped accessible – the three boys are wheelchair-bound, and they slide down the stairs every morning from their rooms.
Paula, originally from England, and Westmeath native Padraic are determined to make every single day a great one for their kids, and the support they’ve received has been “overwhelming,” Paula told the Irish Voice.
Irish Americans have been particularly generous with their time and money, and will once again show their support on Saturday, March 30, at a major Queens, New York fundraiser planned for the Naughtons’ trust, Join Our Boys, which is raising funds to construct a new home/therapy center for the family so that Archie, George and Isaac can live comfortably and safely for the rest of their lives.
The home will not belong to the Naughtons, and will revert back to the trust after their children pass. All of Ireland has embraced the Naughtons and their unimaginable heartbreak, and the first two phases of construction are funded. The New York fundraiser and further efforts will raise money for the third and final phase, a proper therapy center where the boys can receive exercise and other treatments to hopefully prolong their lives.
Paula and Padraic Naughton cope with the unimaginable every single day. They know their children will suffer because the research into Duchenne is not at an advanced stage, but the family is living their lives as best they can.
The pride in Paula’s voice when she speaks of her sons is palpable. “Archie is 13 and has to use a wheelchair all the time. But he sees no limits at all. He is incredibly positive, very smart, loves school and is sports mad,” she says.
Padraic boasts about his musical skills. He’s a drummer who can pick up music by ear, and did so when he met his favorite band, the Red Hot Chili Peppers, in Dublin through a visit arranged by Make a Wish Ireland.
“The band loved him and Archie got to play with them. He heard one of their songs and just picked it up. We have it all on video, and it was so great for him,” Padraic says.
The identical twins George and Isaac are nearly nine years old and will celebrate their First Holy Communion in May. “They love school. They work hard and do really well, but unfortunately, things haven’t gone as well for them as for Archie, which sounds like a ridiculous thing to say because they haven’t gone well for Archie. But compared to him, the disease seems to have mutated much more rapidly in the twins,” Paula says.
Archie only recently became wheelchair bound, but the twins are already at that stage. One of them is using an adult-sized wheelchair. “We have to carry George a lot and it’s quite undignified for him,” Paula says.
Blessedly, the disease hasn’t affected the boys’ mental faculties at all. “And we are very thankful for that. They are totally fine. Many boys who have Duchenne can have impacted mental abilities. Archie is a real go-getter,” his mom boasts.
“He is sports mad and he went Googling to find a basketball team to play on, and he found one in Athlone and asked his dad to bring him. So they went and he had a great time playing wheelchair basketball. Our Archie is very resourceful.”
He and his brothers are aware that they have a serious illness. As Archie is the eldest, he is more clued into what’s going on and has his heart set on the research work being undertaken by the Boston-based pharmaceutical company Solid Biosciences which the Naughtons have visited and worked with to advocate for a cure.
“Archie knows he has a muscle wasting disease and that there aren’t any tablets we can give him to make it better,” Paula says. “He’s very much invested in Solid Biosciences. He met with the team in the boardroom and had lots of questions. He’s very confident Solid will come through. He asks me periodically, maybe every third night, ‘Any news from Solid, Mom?’”
The only treatment, besides exercise/physical therapy, that the boys receive is steroids. The Naughtons, both employed as nurses, have not noticed any significant change as a result, nor have their doctors, but the hope is that the steroids might be preserving the boys’ heart muscles which Duchenne also attacks.
When the boys were diagnosed in 2012 – all three at the same time, the dreaded news coming after a blood test – the Naughtons hoped that there would have been a cure or at least a proven, life-prolonging treatment for Duchenne by now. They worked to promote awareness of the rare disease and helped to fundraise, but the cost of studies and trials is enormous. The biggest hope in the research field now is gene therapy.
The Naughtons’ medical training has helped them cope with the day-to-day realities of raising three boys with an incurable disease, but reality sets in all the time.
“We are practical and pragmatic people,” Paula says, “but it’s very difficult for us. It’s overwhelming at times. You don’t want to see your children crawling up and down stairs.
“You know, I don’t really know if we do deal with the reality of it all. We are so busy and there is so much to do. We both have our jobs, we have the children and their activities, the trust. But when the boys go to bed, I still cry every single night.
“However bad it is for us, and it’s horrific, to be honest, it can’t be anything as bad as it is for the children. Watching George, he can’t stand up anymore. It’s so difficult for him. He’s only eight years old. It’s cruel.”
The March 30 fundraiser is being spearheaded by an enthusiastic group of New York-based supporters. The Naughtons visited New York three years ago and had a number of meetings when they were here. Archie had a blast spending time with New York City firefighters, and the family received valuable advice from hotelier John Fitzpatrick and Barbara Jones, then the Irish consul general in New York.
“People have been incredible to us in America. It is really humbling. We are aware that there are so many good causes out there,” Paula says
Padraic adds, “People in New York don’t owe us anything. But they have taken it upon themselves to help us in our time of need when we are so desperate to try and get a solution for the boys and their accommodation. Fundraising is exhausting. But we are so, so grateful for all the volunteers and friends who have helped us.”
Archie and his mom will be making the trip to New York for the event. The teenager wants to go see a sports team in action and take in the sights, “even though he’s going to really miss school,” Paula laughs.
She uses one word frequently: gratitude. Archie, George and Isaac are everything to their parents.
“We practice gratitude a lot. Every single day, we are so grateful for the boys,” Paula says. “It is true we never envisaged or could have dreamt that all three of them would have Duchenne, but there are people out there who can’t have children at all. We know how blessed we are to have our incredible sons in our lives.”
The New York fundraiser for the Join Our Boys Trust is set for Saturday, March 30 at the Elks Lodge, 82-20 Queens Boulevard, Elmhurst, from 3 p.m. onwards. There will be live entertainment for adults and children; raffles and auctions. Adults can take part in a jiving competition; face painting and arts and crafts for children from 3-7 p.m. For information call Marion Donnelly at 646-384-7478; visit Facebook/JoinOurBoysNY.